There Is an Ancient Thing Inside of Me.

There are eighteen lives between my two cats. Yet I feel that I’ve Iived more. When will reality and reincarnation disunite? For many lifetimes have been lived inside this body.

Nine lives apiece for each cat which naps placid in winter sun.

Yet I have lived one thousand more.

My bones, old skeletons, rattle when I walk like wind through frozen trees.

Count to five.

Breathe.

There is an ancient thing inside of me.

Ghostly.

Sheet thing.

Tombstone skin.

There is an ancient thing inside of me.

A tiger behind a wall of glass.

Power strongly veiled by fear.

I’ve mistaken sleep for death again.

A cold sun dips below cold hills.

A fistful of nighttime pills.

This ancient thing inside of me is of my own commitment.

And even as it whispers, “you are a but a vision, absent…”

I am stronger than you think.

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Antipsychotics Saved My Life.

I’ve lost my passion since starting Seroquel. The act of writing doesn’t fill me with energy like it used to. I’m not writing to free myself from that intangible thing. The intangible madness boiling over like a pot left on the stove unattended. The intangible Schizophrenia. The intangible Mania. The intangible Depression like a bundle of sheets, wet and heavy and cold, protecting me from the fire as it burned around me.

Or was it was another something that pushed me to write? Was it was writing itself? Either way, I’ve lost that fire now. I’m damp most days. Not depressed, not manic, not even happy sometimes.  Unfeeling, tamed. And while it’s a good thing, it scares me. Medication has felt a lot like a tree being pruned. I know it’s good but it feels wrong. Sometimes I miss being caught in the throes of psychosis. So bright and bold I ended up in the Er with doctors trying to hold me down. Sticking needles in my arms and slipping my wrists into restraints. I miss the enticing delirium. I miss the sugar taste of psychosis and how it made my brain feel like a honeycomb with bees buzzing inside. It’s hard to enjoy being well when being sick was the only thing I ever knew.

Antipsychotics turn you into a picture of what you used to be. A string of metaphors, tangled up like an old bundle of wires. You move from being yourself to being yourself on antipsychotics. Trying to leave your illness behind you like a fog which really never recedes. Remission always haunting you. A fear of getting sick again always at the back of your mind. Because mental illness isn’t like other illnesses, or it is but nobody thinks so.

 

psychotic disordersI remember what it was like to be in control, back before the voices started. Way back before the hallucinations. Before the menu of medications. Before these diagnoses and these labels that burn and burn and burn like hot coals on the soft soles of my feet. Schizoaffective Disorder is so stigmatized it feels like a death sentence. The awful combination of Schizophrenia and Bipolar Disorder, two already highly stigmatized disorders, Schizoaffective Disorder is the diagnosis for the unlucky few.  And while antipsychotics are a necessary treatment for such aggressive illness, and while I often complain about the side effects, the truth is antipsychotics saved my life. It’s been scary, becoming someone else. Not the person before Schizoaffective, and not the same person I was during my darkest days. I’m a new a person now. Someone who can think again, and sleep again, and breathe, and concentrate, and most importantly I’m someone how who can deny my hallucinations and delusions the power to control me.

Psychotic disorders can feel like a death sentence, but they don’t have to be.

But I’m talking in circles here.

 

Fast and Without Too Much Sadness

   Red curtains move in the wind of an open window. Warm wind then, on warm sunlight, peers through. Long sunlight fingers push aside the air. Dust floats. My cats like to lay in this type of sun and I like to sit with them, letting my socks get warm and warm my feet. Outside there are bugs and branches and leaves turning red. The play-dough scent of apple branches being pruned from their trunks evaporates around me even as I write. The smell of hardwood. The smell of sweet apple flesh and hazelnut candles. Pine trees at the top of the yard are green and settle their stout bodies against the cooling topsoil. People lean on one another in the face of gathering winter. For now, it’s still autumn. For now, we still have to use all our apples up and fix the snowblower and stitch our jeans and prepare the house for colder weather.

   The days grow shorter and darker and before we know it snow will arrive and we will be buried up to our necks in it. The cats will stop shedding and pack on some winter weight.

   The weather allows for hot showers now and I take ones that border on the cusp of being too hot. When I shower I do it at night with the lights off. Letting the water rinse the coffee grinds and chewed nails and dried skin away.

   Odd to think that I still don’t know myself. After all this time alone we never became acquainted. I am an introvert afraid of other people. This includes me.

   When I look in the mirror I don’t see myself anymore. I see a self made new by flesh. By antipsychotics and antidepressants. By new scars and new wrinkles and new stretch marks. I see a new body and a new brain. But I don’t see myself.

   It’s hard, having been so many things. Flashes of an aging young adult who never got to know herself. I was a kid once. A kid who always kept my hair cut short. A kid who needed braces but never got them. Once upon a time, I was a tomboy. An arm wrestler in the fifth grade who could beat the boys. For a while, I was a confused preteen. Baggy pants and tight shirts. A teen who didn’t want to have sex. An anorexic. A kid who, while good reading books, was poor at reading people. I obsessed over spirituality and religion. Questioning everything to the point of insanity.  I was homeless. I was a runaway. I was unhealthy. Underweight. Sick. Bedridden. Paralyzed. Non-Epileptic (PNES). Dependant. A smoker, god forbid. Someone buying drugs in the back seat of a station wagon that wasn’t my own. Having sex without enjoyment. An all A’s student attempting suicide in the middle of the night. A self-harmer. A frequent flyer at the hospital. Psychotic. Manic. Depressive. Confused. Boney. Absent. Schizophrenic. Bipolar. Schizoaffective. Catatonic. A nighttime-midnight-in the dark-showerer. A nighttime-walker. Empty. Lost. Someone who wished they were dead but ended up happy to be alive (well most of the time.) A college dropout. I used to be someone who listened to the voices. Someone who followed the hallucinations.

   And then came the antipsychotics and all the things I’d ever been came fullstop. Now I’m soft and bitter and my brain is full of Seroquel soup. I’m caught between meds having saved my life and having destroyed it. Of course, I should say that Schizoaffective Disorder did the destroying. Sluggish waves with no force behind them turning my psychotic wheels. Caught between wanting recovery and wanting destruction. For being happy for new my health and being spiteful of it. Between being accepting of antipsychotics and believing the benefits to be disingenuous.

   Out of all the things I’ve ever been I’ve never known any of them for very long.

  I want to see that change but I can’t say I know for sure that they will. Of course, this year went by faster than apples are falling from their branches this autumn. If I close my eyes and hold my breath and take my meds perhaps another year will move on like this one did. Fast and without too much sadness.

 

   

 

Will My Illnesses Ceasefire?

I did a stupid thing and I got a part time job. A basic 9-5 type of job. A cashier/bagger combination down at a local grocery store in the next town over. I haven’t held a job in over two years. Not since the wheelchair, the Schizoaffective Disorder, the seizures, and the chronic pain, and the suicide attempt. It’s only about fifteen hours a week, barely part time.

I did a stupid thing and I got a part time job.

I told my boss I have to take meds three times a day and can’t work past three in the afternoon. Because I still need time to go home and cry at how bad my body hurts. Time to come home and electrocute myself into numbness with my tens unit. Time to choke down too many ibuprofen. Time to spend too long in the shower. Time to do my therapy prescribed stretches. Time to come down off the high of hearing derogatory voices all day. Even after staying faithful to my antipsychotic for almost two years, I still hear voices constantly. A droning noise of voices. A sinister John Carpenter amalgam of sound. Every time I try to do something good for myself the voices are always right there. Always reminding me that I’m going to fail.

Can I even handle a job?

I’d much prefer to stay home and stare out the big bay window at the apple trees. 50/50 it will rain or shine but I can always feel the rain in my head regardless. Psychosis pulling my soft brain apart like sticky cobwebs.

You might ask what it’s like to live with chronic mental and physical illnesses. I’ll let you know what it’s like. It’s like your body and mind are fighting a war against the one thing meant to keep them alive. It feels like you were born to be destroyed.

I did a stupid thing and I got a part time job. Will my illnesses ceasefire? I doubt it. Chronic illness waits for no healing. A ravaging train with no breaks.  It’s an unwelcome guest in a body I didn’t even get a chance to learn to love.

 

The Hardest Lesson I ever Learned

It happened right in the middle of sex, the most terrifying event of my life. It started like an ache at the back of my mouth that stopped me in what I was doing. I’d never felt a pain like it in my life. And then my tongue contracted and in only a few seconds I couldn’t talk.

I sat up fast. The pain moving down my neck. I struggled into my clothes.

“Something’s wrong,” I gasped, managing somehow to get words past my cramped up tongue.

My fiance looked at me, not unjustly confused, “What is it?” An honest note of concern in his voice. He looked me over, “What is it?” He repeated.

“It. Hurts. I don’t. Know.” But this time when I spoke it came out garbled and unintelligible. It had barely been two minutes and already I couldn’t open my jaw. Then my neck contracted in what was close to the worst pain I’d ever felt. My head seemingly pulled back like an arrow on a bow, only no release, just mounting pain.

My joints all suddenly felt strung together by tight twine with no give. My muscles had turned to rocks.

I remember slowly arranging myself with my neck resting on the edge of our mattress. Attempting in a feeble way to prop my neck up to relieve the pain.

Then it rushed through my body, my hands curled up burning paper and my legs, bent at the knees, wouldn’t be unbent.

Time seemed to come apart, dissolving like salt in the intensity of my own fear. Was I having a stroke? I qualmed at the thought, surely I was too young to have a stroke. But I thought for sure I was going to die. Right on the wooden floor of my first apartment, curled inside of myself, a rigid skeleton. I hadn’t said goodbye to anyone. On my obituary, all it would say was: her death was certainly unexpected.

I think I waited like that for about an hour. And for that hour I was in the worst pain I’d ever experienced. Sweat gathering on my brow, fear like gauze wrapped around my ribcage. Breath coming too fast, and heart beating too quickly. Every part of my body, all my bones, and muscles and tendons, and vertebrae and hips, my feet and even the tongue my mouth and the brain in my skull, ached so terribly it made my eyes hot and I cried. I was going to die. Holy shit, I thought, this is it. And had I died right there, with my fiance crying in the other room afraid to show how scared he was too. With his mom speeding down the main road too fast trying to reach us. With my body exploding in protest to my immobility, I would’ve been thankful. That’s’ how horrible the pain was.

It’s crazy to think this traumatic event was all to blame on a doctor. One doctor in the emergency room who did a half-assed job and later wouldn’t take responsibility for it. The hardest lesson I ever learned was if the doctor had to give you Haloperidol, you’d better make damn sure they’re giving you a side of Cogentin to go with it.

When his mom showed up with his brother in tow I was whisked up from the floor and put in the front seat of her old green truck.

It was the fastest twelve miles I’d ever traveled. When we arrived at the emergency department she took me up in her own arms and carried me through the double sliding doors. Then she yelled something like, “We need some help here!”

I was so hot from all the pain I remember how nice the air felt on my face. I remember thinking I was happy that it would be one of the last things I ever got to feel. The cool autumn-in-Maine air, laced with distant wood-smoke and water.

They raced me to an examination room. Doctors poked and prodded me. Trying to figure out what was wrong. Then, then you’ll never guess what happened. In walks the same irresponsible doctor from the previous night. The guy who treated my psychotic episode with one huge shot of Haldol and had sent me home just hours later.

He said matter of factly, “She’s catatonic. Schizophrenic. Get her an antipsychotic and some Ativan. IV nurse.” Then he turned to me and said, a little too close,”If you keep coming back here we’re gonna have to hospitalize you. Do you want to go back to the hospital?”

I shook my head no. I was beyond frightened. My tongue at this point protruding from my mouth. And my limbs pulled completely, and involuntarily, inward. I was not unlike Gregor from Kafka’s The Metamorphosis, transformed into some huge bug. All my limbs turned in and dead-like, just the same as a bug with its insect appendages pulled across its chest.

Then the doctor left the room and my fiance and his brother finally met up with us. We waited for hours for me to come down from what was actually a dystonic reaction to Haldol. Something that patients experience when not given a Central Muscarinic Antagonist at the time of admission. My psychiatrist apologized later, even though it wasn’t her fault. I still have nightmares about that night and now fill out Haldol on my list of allergies. I’ve actually been too scared to go back to any ER for psychiatric emergencies. Which is a shame because if doctors treated people with chronic and mental illnesses like they treated everyone else, maybe they’d find us worth paying attention to.

 

 

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Being Chronically Ill Means Being Ill Forever

Days spin into nights and into days again. Summer dragging on and on. A hot beast by August every year, a threatening season despite its spring relation. By the end of summer, the ground is cracked and dry like the heels of my mother and her mother’s mother’s dry pale skin. Even the birds are tired by the end of August and all the people are angry and hot. But then the days get cooler and the fist of fall hits me on the chest, breaking me open at my breastbone to reinstill my winter bone ache. The blow forcing my lungs to expel very last breath of summer air. The leaves fall from the trees until they are thin skeletons, standing like a relic of another year gone by. Then it’s winter and the tight-lipped holiday season passes by. The ice moves in and we in Maine are buried by seasonal Nor’Easters until we are up to our throats in snow. My skin grows cold and my pale sinew is stretched over the bones of early nights. Wintertime depression moves on me like a ghost.

And before I knew it another year in sickness passes me by.

I think back on it. All my exhaling between my doctor’s appointments. I offer up my white arms for blood tests and I’m poked, prodded and rearranged until I feel unlike myself. Grilled with the same monotonous questions again and again. How are the voices? The pain? The sadness? Do you still hurt all the time? Have your migraines changed? Are you still sleeping too much? Eating too much? How’s your lower back? Do those terrible cluster headaches still wake you in the early morning, covered with sweat? Is your pulse still tachycardic? And that wakes you too when it races at night? How are the hallucinations? Are they still trying to read your mind?

The answers grow in the back the of my throat and are forced up from my stomach, rattling around my mouth like bitter candy in a plastic bag, “I’m fine,” I say and make my next appointments.

Then six months of winter lapses.

Then summer comes again.

Then fall, winter, and spring.

Being chronically ill means being ill forever.